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Hassle Of Being A Patient Can Turn Into A Crisis Without Sick Leave

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Here's a typical scenario when you have a medical problem. You go to your doctor's office, then have to run across town to a lab for a blood test and then you also have to get an appointment for an X-ray or MRI. There's a good chance this will all require a phone call — or a lot of phones calls — with your insurance company.

It's a hassle and it's time-consuming.

But for many people it's even worse than that.

That's because about a third of working adults say their jobs don't come with paid sick leave, according to results from the latest poll by NPR, The Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

And for some of those people, taking care of their health needs can lead to a financial crisis.

Take Valerie Hesse, a catering chef in New Orleans. "I've had allergies — pollen and dust and everything else — since I was a kid," she tells Shots. "Over the years it got to the point where I was having frequent sinusitis, sinus infections, occasional bronchitis."

Hesse went to the doctor a lot to deal with sinus and ear infections. She tried to schedule the appointments around her work hours, and sometimes her doctor would give her a break and prescribe antibiotics over the phone.

But sometimes she'd be called in at the last minute. Or she'd have to work an extra shift.

"I had to reschedule, postpone, skip," she says. "I wasn't gonna get paid and you gotta work."

Over time, the constant congestion and infections were damaging her hearing, so last year Hesse decided to have surgery to fix the problem. Recovery took weeks.

By the time she was able to get back to work, she had a reputation as sickly and unreliable.

"The owner of the company told me that he had decided to make a management change," she says. "I was let go."

Hesse is now living off savings as she makes plans to open her own catering business. She says she needs to be her own boss to be able to take care of herself.

Our poll found that 32 percent of people in the U.S. are like Hesse. They don't get any paid sick days. And 24 percent have no paid vacation time.

So unless they work odd hours, people without either benefit lose income if they want to take care of their health.

That's a real problem, but it's not the only consequence of what Dr. Victor Montori of the Mayo Clinic refers to as the "work" of being a patient.

He says the health care system is designed for the convenience of doctors — and the result is that patients find themselves running to doctor's offices, labs, imaging centers and back, often carrying their records along with them.

"That is not an organization of care that started by thinking, 'How do we meet the needs of the patients?' " Montori says.

The current setup was created at a time when people saw a doctor for an injury or infection. By contrast, today most people by middle age are dealing with a chronic condition that requires regular care.

So, like Hesse, they have to fit health care into their daily lives. And the system that requires a patient to leave work, go to the doctor, go elsewhere for tests and then go to a pharmacy, isn't very useful, Montori says.

"For people with chronic conditions, the health care system is blind to their context," Montori says. "In particular, it's blind to the work of being a patient and the capacity that people have to shoulder that work and make it happen."

And if patients don't do everything right — if they don't get their tests, or refill their medications on time, or go to follow-up appointments — they are deemed by the health care establishment to be "noncompliant," he says.

"We just decide that it's the character of the patient that is to blame and move on," Montori says. "Rather than reviewing our own behavior as a health care system and see how is it that we have created so much work for people that they no longer can do it."

Montori and his colleagues are now reviewing that behavior and trying to determine how to make the health care system more responsive. One approach is to put health care providers in schools and workplaces and to make them available during evenings or weekends.

"Once we start thinking about meeting the needs of people, the first thing we say is, 'Where are these people, and how can we start thinking about meeting their needs where they are?' " Montori says. "Can the kid not get the asthma care at school? These kids are at school for hours and hours and hours."

Many doctors say it's not just the system they created that is complicated. It's also complex rules imposed by Medicare and insurance companies that make being a patient harder.

"You can't do multiple procedures at the same time or on the same day without having the second procedure's payment cut," says Kristine Longshore, an ophthalmologist in Doylestown, Pa.

If she wants to operate on both eyes of a patient, she'll be paid less if she does both eyes at the same time than on different days.

Sometimes, she says, she's not allowed to do two procedures on the same day at all.

"I cannot image the optic nerves and macula on the same day even if the patient happens to have both glaucoma and macular degeneration," she says. If she does, Medicare won't pay for one of them.

"And that's a real hardship for patients. They may have to have the right eye treated and come back the following week to have the left eye treated," she says.

Longshore says insurers, including Medicare, are already cutting payments to doctors. With their incomes shrinking, doctors may be reluctant to earn even less by doing two procedures at the same appointment.

It's those sorts of insurance practices that make getting health care cumbersome for Tammy Davenport, who lives outside Houston.

She recently needed an MRI to determine why a year-old ankle injury wasn't healing properly. Davenport has hemophilia, a disorder where people bleed excessively, often into their joints.

Last year she fell down some stairs and landed on the ankle. She ended up in the emergency room and could barely walk for a month. Now, 15 months later, she was still in enormous pain, so she went to her doctor and he ordered the test.

"It took me eight hours on the phone, one full day of work, to get an appointment for an MRI within 15 to 20 minutes from our house," she says.

To control costs, Davenport's insurance company requires an outside contractor to approve the doctor's authorization for the test. A second contractor then schedules the test. That company works with only three MRI centers, and all of them were more than 90 minutes from her home.

Davenport says there were several within a few miles on her insurance company's website, but the company refused to work with them. After hours calling different people — all while she was supposed to be working — she got the appointment.

"Its all just a random phone tag that you have to go through just trying to get an answer to a question," she says.

But there are signs of change. The health care system is shifting in ways that may make things easier for patients, says Gail Wilensky, an economist who was head of Medicare and Medicaid under the first President Bush.

She says doctors are leaving behind individual practices and joining health care groups that combine specialties and services under the same roof. "The general move toward better integration of care can be a major improvement and convenience for the patient," she says.

But that transition will take time. It requires doctors and health systems to rethink how they've been doing their work for decades.

In the meantime, people like Hesse will continue to have to choose between getting healthy and getting paid.

Copyright 2016 NPR. To see more, visit

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